The Australian Support Group of “NTM Info & Research”

The Australian Support Group of “NTM Info & Research“, is for Australian patients diagnosed with infections due to nontuberculous mycobacteria, to provide

  • Information
  • Guidance
  • Understanding
  • Support

The mission of “NTM Info & Research” is to save and improve lives through research, education, early detection, and improved treatments for people with pulmonary Nontuberculous Mycobacterial disease.

Debbie Wooster and Mervyn Couper have developed this web site, which has been reviewed by Australian medical professionals. Debbie Wooster’s mother succumbed to this infection after 16 years of suffering. Debbie was very devoted to her mother and has studied her  infection in depth. Over the years Debbie has accumulated a lot of knowledge, which she would like to share with other sufferers. Mervyn Couper was diagnosed with MAC in 2013 and founded the Australian Support Group and this website.

We aspire to form a sustainable NTM Patient Support Organization for Australia, with a mission to:

Support NTM Patients
Advocate for NTM
Raise research funding with an emphasis on local knowledge

Our embryonic efforts so far have found a number of NTM sufferers. However to create an organization able to achieve the above goals, we need more people. Many NTM sufferers need all the energy they have to continue with their lives and deal with the challenges NTM poses at times. Perhaps you have a member of your family or close friend, who has seen you struggle with your challenges, who would be prepared to volunteer to help. We do not wish our efforts to wither away, so please do your best to help to continue our cause.

Acknowledgements:

  • Dallas McMillan of  “Influential Digital”.
  • Dr Rachel Thomson (Qld) and Dr Justin Waring (WA) are strong supporters of establishing an NTM Support Group in Australia. We are very grateful for their support and encouragement. Dr Rachel Thomson is the leading NTM specialist in Australia and is recognised internationally for her work. We hope, in time, this web site and our support group will help in some small way to help her in her work.
  • Amy Lietman of  “NTM Info & Research” of whom we are part, has strongly supported our work, and will continue to make available significant resources to enable us to move us forward.
  • Linda, a member of the Inspire forum has been a strong and committed supporter of our efforts in Australia. Many of the links to various valuable web site information has been found by Linda.
  • Debbie Breslawsky of the Palm Springs and Desert Cities NTM Support Group in the USA has contributed the “Info/Living with NTM/’How to make Doctors Visits effective’ and ‘Check list for your next Doctor’s visit'” and the “Dietary Modificationswithin the “Info/Diet & GORD” information. Debbie has also worked with us to develop the “Golden Rules” topic. Her experience and knowledge has been invaluable.

 

Testimonials.

Thank you so much for referring me to Dr Thomson. I now feel as though I am in the care of someone who has my best interests at heart.
November 2014 – NSW – just diagnosed with MAC
 
I think it’s wonderful what you are doing in relation to this disease.  Inevitably rare conditions like this don’t receive much attention in the media, and patients often don’t know where to go to get advice.  It sounds like you are really helping to address a need.  Keep up the good work.
November 2014  – NSW – Lung Specialist
 
My specialist here thought treatment would not have a good outcome for me (don’t tolerate meds) so nothing happens. I also have had a fungus and bronchiectasis in the lungs – all too much for the normal GP.
With no real support it’s all a bit depressing. Thanks again your advice, is much appreciated.
December 2014  – NSW – MAC re -infection
 
 Good to hear from you again and thanks for the extra info and links. You are a great source of knowledge as far as NTM is concerned.
December 2014 – NSW- just diagnosed with MAC
 
Thank you for all the information you have sent me, I am so appreciative of your time and thoughtfulness, you have really made me feel so much better.
I had already read your mum’s story some days ago and really related to her. I hope she is well and I am thinking of her as I am of a similar age and have a similar history of a healthy lifestyle.
Again thank you so much for all your kindness.
January 2015 – NSW – Mac re-infection
 
I hate to bother you as I know how busy you are with your mother. You are the only person I know who understands this condition.
Regards
January 2015 – NSW – MAC re-infection
Thank you for your prompt response.  I am not familiar with NTM? Anything you can tell me about MAC will be greatly appreciated
Kindest regards,
January 2015 – CALIFORNIA – USA – Awaiting confirmation of MAC diagnosis
 
Thank you so much for all the information you sent me. I have checked out the links, and have more to go. The links are fabulous and I can’t thank you enough
January 2015 – CALIFORNIA – USA – Awaiting confirmation of MAC diagnosis
 
You are so lovely to be finding out info re Adelaide. I have tried but with no success. Anyway thank you again Merv.
16 July 2014 – NSW -MAC recurrence
 
 I just wanted to say thank you for the booklets “Insight” I received from Debbie Wooster. The booklets were a great help thank you.
August 2014 – NSW – MAC recurrence
 
 Thank you for responding so quickly with such excellent information. I greatly appreciate your thoughtfulness.
 October 2014 – NSW – Just diagnosed with MAC
 
I received the booklets today. They are an excellent reference, so thank you very much.
 October 2014 – NSW – Just diagnosed with MAC
 
Thank you so much for your rapid and comprehensive reply. Heaps of information and great links. I really am grateful to you for spending so much of your time compiling it all.
November 2014 – NSW – Just diagnosed with MAC
 
Hi Debbie
I came across your Mum’s story purely by chance. I was desperately searching for information and googled ‘mycobacterium avium complex Australia’ and the ‘lungpuzzle’ website came up. One thing I have noticed, and maybe you can help me, there are no statistics on MAC for Australia, or any of the individual States. I’ve contacted the Australian Bureau of Statistics and they have nothing.
November 2014 – NSW – Just diagnosed with MAC